When Cheryl was in the hospital to treat increasingly severe medical problems, it became clear that she needed a new wheelchair. She had been using a manual wheelchair, meaning that she used her hands and arms to turn the wheels and move around as needed. That had worked for years, but now she was no longer able to propel the wheelchair herself.
Cheryl isn't quite sure who chose and ordered a new chair for her; she wasn't consulted. She was pleased to find that Medicare paid for a new electric wheelchair that had so many features, she reported, that it "does everything but feed me." It did seem quite wide, however, so she asked family members to measure her doorways at home. It would be a tight fit, but it would work.
Before she left the hospital, though, a new problem cropped up. The new chair was 150 pounds too heavy for the wheelchair lift on her van, and 10 inches too tall to fit inside. When she raised these issues to the physical and occupational therapists, they shrugged.
Cheryl sounded regretful that she hadn't thought to ask about these issues earlier. But she had been critically ill, and had brain injuries that made it difficult to concentrate and comprehensively think through all the possible angles concerning dozens of different topics that needed to be addressed during her care. Even if she had thought to check, it would not necessarily have been easy to get the relevant information. For example, I checked the manufacturer's website for the chair she ended up with, and while it provides all sorts of details about the wheelchair, its weight is not one of them.
And why should the patient be the one who has to think of all the implications of a new piece of adaptive equipment? Aren't there medical professionals or device specialists who have handled dozens or hundreds of orders for such equipment, and who have - or should have - checklists that spell out the lengthy list of issues that need to be considered to ensure that the device makes life easier, not harder, for someone with disabilities?
Cheryl explained the effect that the mismatch between her van and her new wheelchair has on her life: "Now it is too late. Now I sit home and go no place. My daughter does take me to medical appointments pushing me in my old manual chair so I don't do more damage (by trying to propel the chair myself). I was used to being very active, coming and going as I pleased, shopping, being part of my community and driving cross-country alone to visit family. Now I am in jail until I can afford to buy an electric chair light enough for my lift or a new van -- about $50,000 or $60,000, I am told."
I checked about a dozen websites that offer advice for selecting a wheelchair. Many of them explain the differences among transport (light-weight folding) chairs, standard manual chairs and power (battery-operated) wheelchairs. They give useful suggestions about how to make choices for features such as seat depth and width. They provide safety tips for using a wheelchair to prevent harm to its user. They offer maintenance checklists.
None of them mentions checking to make sure that the wheelchair you choose can be supported by the wheelchair lift you have. None of them mentions checking to see if the wheelchair will fit into your vehicle.
To the casual observer, these omissions are hard to understand. What do they suggest about how the users of electric wheelchairs are viewed? It is as if people who need power chairs are expected to be homebound, as if the only issue is whether the person fits into the chair - not if the chair can leave the house and help the individual participate in life outside the confines of her home.
What can you do if you or someone you are helping is going to be getting a power wheelchair or any other piece of adaptive equipment? Make sure you consider not just the functional features of the device itself - but how it will get to all the locations where it will be used.